I am so appreciative of how much my parents have done for me as I struggled through my kidney illness. You realize how dire the situation can be when you have no one to rely on for support. They did more than take me to dialysis. They prepared meals, did errands, accomplished chores bucking me up all the while—with nary a complaint. Anyone who has suffered a debilitating condition for a long time knows how important people can be for morale. I had this in spades to my great fortune. I feel I must do something in return.

While my parents don’t expect anything, and they would reject a major hoopla, I decided to make a great dinner. It’s the least I can do and I know they will come gladly and enjoy it. Everything lately is a celebration of my new healthy life. I have the energy and wherewithal to put myself out. This is not something you would have witnessed a while ago. Dialysis worked its magic and I am my old self again. It is time to make plans to entertain family. All I have to do is select a date and mark it on my calendar. I want it to be extra special so I am pulling out all the stops: nice china, good silver, crystal glasses and a floral centerpiece. I am looking for a real tablecloth that I hope miraculously appears in the linen closet (a few tiny shelves in my bathroom). This is no ordinary weekend casual dinner. My recipe books are out on the living room floor with several pages strategically marked.

I want a three course menu with a homemade dessert. Nothing store-bought for mom and dad. I will be cooking a feast and will have to get up at the crack of dawn on the eventful day. No matter. I am pumped and ready to please. A nice crown roast with a delicate “jus” will be featured after an appetizer and fresh, crisp salad. Garden vegetables will accompany the roast alongside roasted potatoes. Rolls made from scratch will sit in a pretty new basket lined with an embroidered cloth. Thanks, grandma, for the gift.

The day arrived and the table was set. I couldn’t wait for the meal to start. My mother, in particular, was in awe. She knew that at one time I had a major lack of oomph. Now I was like a whirling dervish. Everything was cooked to perfection and served simultaneously and on time. I had selected a nice rose to please all palates. The dinner was a major success. I wasn’t tired a bit after my parents went home (not before dessert and coffee of course) and had the energy to do all the cleanup and dishes. Fortunately I have a big farmer’s sink and a flexible pullout faucet from https://www.kitchenfaucetdepot.net/. It makes even pots and pans a breeze. Bravo! I have to pat myself on the back for a job well done.

Because I had kidney disease, I was on dialysis for some time. People new to the experience ask questions about the process and I have volunteered to counsel them through my doctor’s office. They want to know how I could sit for so long without getting anxious, bored, stiff and mentally tired. Sure, you have to prepare yourself for any of these situations. Sitting for long periods during your dialysis treatments can be difficult at any stage of your illness. Here are some suggestions on how to deal. I applaud anyone who can get through dialysis without complaints.

To help ease the way for the many long hours, be sure to ask about different seating options. You can sit upright and read or recline on a bed and relax. On different days, you may change your preference. The assistants will make every effort to make you comfortable so let them know if you have any problems. Communication is my first and most important suggestion.

Next, you can navigate the dialysis waters by learning how to deal with sitting fatigue. I recommend this blog post by Higher Massage on the topic. It happens to everyone, no matter how many pillows they give you. Even if you are lying down, you will experience muscle aches now and then. My recommendation is to ask for a massage at the end of the session, or even in the middle of it if it is convenient. I found massage to be of great help and I went home feeling much better. If I waited until later, the stiffness had already set in.

Last but not least, you will need to pass the time by doing something to preoccupy your mind such as listening to music, watching TV, sewing, doing crossword puzzles, or reading. How about a combination of several of these. Depending upon the time you spend in dialysis, you will have your preferences. Some days you can do one thing and other days, you can change it up. Be sure you take something with you that you can look forward to. I often found that I enjoyed talking with other patients in the room. Sharing stories and special interests always was interesting and enjoyable. You feel less tied to your dialysis machine when you behave like a real human.

Most dialysis centers will offer things to do and there is always a plethora of magazines. You always have time to catch up on your reading when you suffer from kidney failure. The same goes for watching recorded movies and TV shows you missed while away. I love movies, so this was a real boon in dealing with dialysis. I also talked to friends on the phone, texted messages and read my emails. Many family members knew my hours and made themselves available. They were so supportive.

Above all, my suggestions including keeping up a good front. A positive attitude will take you far. You will get through the experience with your sanity intact.

When I was little, before the onset of kidney disease and the trials and tribulations of long-term treatment, I loved going to friends’ birthday parties with those ubiquitous bouncy houses. It was all the rage in those days. They varied in theme but they all involved endless jumping for joy on flexible rubber mats. Sometimes there was an abundance of little plastic balls.  Now that I am older and well, I have a sudden urge to buy an outdoor trampoline like one of these for my backyard. I think it is symbolic of my inner exuberance now that dialysis is over. So what do you look for in such a device? Are they all the same?

Gosh. They come in so many sizes and shapes. First, I eliminate the ones that are strictly for indoors such as home gyms or sun rooms at home. They are mighty fancy. They might rust in the rain and who wants to tarp them every day?  I do care about fitness, but I am more into entertaining myself and friends these days as I go about my normal life. So maybe a deluxe model kids’ version will do. It is a far cry from a trainer’s trampoline. It is larger and built for fun. I may well burn a few calories in the process and lose a bit of accumulated weight. But this is not my immediate purpose. I will go for “safety cushioned bounce”, “deep bounce for superior performance” and “unmatched stability.” I love product descriptions on the Internet. They can sell anything.

My trampoline has been selected and I await delivery. I tell everyone a party is in the works. I might as well combine a barbecue grilling session and the inauguration of the new gear. I will set out some great snacks and a boat load of cold drinks and make it a real backyard festival. Now, who would go to this extant to celebrate a new purchase, but I am in a different category having recovered from serious illness. I enjoy acknowledging any and every event in life as it is a treasure to be savored. That is my message to you.

The trampoline is a symbol of release and freedom from any ties that bind such as the connections I faced to the dialysis machine. It was long and hard—but it is now over. Jumping in the backyard reminds me that I am well and happy and have much to appreciate. Little did I know as a child that my favorite pastime would develop into the adult version. Spending time on a trampoline may seem juvenile and silly, but let me tell you that it is not so. It is more than therapeutic and will take away any troubles you have short or long term. Why did I wait so long? I advise anyone who feels a need for a different kind of exercise to get one soon.

I consider myself to be a bit of a miracle in human form. Sure, lots of people overcome health issues, but how many have dialysis and a kidney transplant? I bet you could count the people you know on one hand. Maybe there are none at all. So now you have me. The operation saved my life. When I woke up after surgery, I instantly felt better. Since then it has been uphill all the way. I had gone through years of treatment, sitting at that darned machine three times a week for hours on end. Well, if nothing else it gave me time to think, read, listen to music and text friends. Of course, it had great value and was, in fact, a necessity of life. But I can sure think of better things to do. Now that it is over, I have oodles of free time to do what I really want. My dad also has time on his hands since he doesn’t have to take me to dialysis. Life is good for the whole family!

I used to keep him busy week after week. I still do in different ways. This week I asked him to install a flush mounted ceiling fan in the downstairs family room. By the way, we live in a split-level house. It has its good and bad points. I spend a lot of time on my hobbies there when not watching TV or running a movie from my vast collection. He is more than happy to help, especially when it has to do with good times and not my health. But he never complained!

The room downstairs is dark and hot. There isn’t good circulation of air. It has no central heating or air conditioning as in the rest of the house. Temperature control and lighting call for another plan. I hit on the idea of a flush mount ceiling fan because the room is slightly lower than normal. It wouldn’t do to put in one of those nice suspended models. It will still look good and do its job of cooling off the room. The central light fixture will work on a remote so that it can be dimmed or turned on full force as needed. I love the idea. I should have thought of it long ago.

Dad did a great job as the family handyman while I did mine as amateur decorator. I picked out the perfect fan with walnut-stained wood blades that match the floor. The brass fixture with etched glass gives the room a bit of an old-world look that goes well with the retro furnishings. We killed many birds with one stone, if that is possible. When I retreat to the den when I need personal space, I press the remote and the fan begins to whir. A gentle breeze immediately starts to cool me off and I can sit and enjoy myself for hours. I am used to sitting for a long time!

Having kidney problems is expensive. Like, really expensive. If you don’t have insurance and you have to pay out of pocket, dialysis alone is going to cost you somewhere between $53,000 to $72,000 a year. It could be more or less depending on where you live and what type of dialysis you receive, these are average numbers. That’s not including any of the medications you’ll have to take, or transportation back and forth the three times a week you’ll need to be there, or any procedures you’ll need, like getting a fistula put in or things like that. It also doesn’t include the costs of the things you need to keep the fistula or port clean or anything like that. That’s just the straight-up cost of having a machine do the job your kidneys are supposed to.

And if, for whatever reason, you need to get emergency dialysis at a hospital, your wallet will take a serious hit. They have been known to charge upward of $9,000 for a treatment! So be prepared to only have your emergencies during your regular doctor’s hours or while your dialysis center is open if you don’t have a lot of money.

The good news is that insurance companies have to pay for dialysis. The bad news is that there’s often a copay or cap or something. Another fun fact: your insurance company, not your doctor, decides how many times a week is medically necessary for you to receive dialysis. Usually they’ll cover you up to three times a week (which is often what your doctor recommends anyway), unless you meet certain criteria or have certain conditions. Many won’t approve home dialysis unless you are in end-stage kidney failure. Sometimes, your regular insurance only covers things for a month while you wait for Medicare to kick in, so they make you rent everything.

It’s very difficult to deal with everything you need for dialysis in the first place. Kidney failure isn’t fun, either. You don’t have a lot of energy and it’s almost impossible to work (or go to school) full time when you have to be at a dialysis center three times a week for hours each time. When work is the main source of insurance for most people, that’s a problem. And for me to be covered under my parents’ insurance, I was supposed to be a full-time student, which I stopped being when I graduated.

There was no other treatment option for me, so my parents had no choice but to pay everything that the insurance company told us that we owed so that I could continue to get treatment. While they always try to keep me out of the financial aspects of everything, I know it is something that they stress over.

We really need to push to make sure that people continue to have access to the care that they need, especially with something as expensive and life-saving as dialysis. It needs to be affordable enough so that nobody has to decide between food, shelter, or treatment. I may be young, but I can still send letters to my congressional representatives to fight the good fight and make sure that people have access to affordable care.

I constantly find myself being told by other people how to feel. They often point out to me that things could be worse, or that I should consider myself lucky. And while I do, now that I have somebody else’s well-functioning kidney inside me and it is doing its job well, it really bothers me when other people tell me how I should feel. Sure, other people have it worse. But why can’t we all acknowledge that getting so sick that you need a transplant sucks? If you’re in this position and somebody tries to say this to you, tell them, “Yeah, but so many people have it easier than me, and it’s ok to wallow every once in a while!”

When I got sick, people told me that I was ‘lucky’ that it wasn’t cancer. I certainly didn’t feel lucky. I felt terrible. I was sixteen and I couldn’t do anything that my friends could do. I had to be homeschooled, I missed parties, dances, and even dating. I didn’t get to go to senior prom and I didn’t get to walk across the stage with my class come graduation day. Instead, I’d been diagnosed with renal failure and had to start doing dialysis. While yeah, it wasn’t chemotherapy, dialysis wasn’t a treatment. It was simply a stop-gap so I didn’t DIE. If that is somebody’s definition of lucky, I’d hate to see what they think is unlucky.

Then after I went on the transplant list, I was told I was lucky again. Personally, I don’t think anybody on the transplant list is lucky! But everyone would talk about how nobody had to die to give me their organs. I get it, I didn’t need a heart or a double lung transplant or anything. I also understand how it is terrible to be sick and dying, and catch yourself wishing harm on a healthy person so that you can get better. I get that. That’s terrible.

If you have a large family, it’s easier to get a donor kidney. When you’ve got a big pool of relations to test, it increases your chance of having somebody be compatible. I don’t have a big family. Like me, my mom is an only child. My dad has one sister, who was a match. However, she almost simultaneously learned that she’d gotten pregnant with my cousin. So you know she wasn’t giving me her kidney. I couldn’t even be upset about it, because she and her husband had been trying to start a family for over a year or something. Of course it would be right when I needed her kidney that it finally worked, but I am completely capable of being happy for someone else while being sad for me.

When you don’t have a match in your family, you can ‘advertise’ in your neighborhood, community, or even across the country to find a match. Of course, this costs money. Money my parents didn’t have after the medical bills started pouring in.

I am grateful every day to the person who was matched up with me even though we had never met. That was probably the first time in the whole lousy situation that I considered myself “lucky.” The reason I felt that way was simple: I was lucky that my name was at the top of the list and that a match happened before I got too sick for the procedure or just flat-out died. Now I will proudly tell people that I’m lucky, but I certainly would never tell anyone else in my situation how to feel.

If you need to lose weight, there are countless diets you can choose. Some of them involve not eating carbs, some make you avoid sugar, others require ordering your food directly from the diet company, others involve counting calories, points, or macros. And some are cleanses or detoxes.

In theory, shouldn’t your own body be doing the cleansing of anything you ate? Isn’t that the whole purpose behind your liver and kidneys and things like that? As somebody whose kidneys didn’t work properly, I wondered what all these diet cleanse/detox diets actually did. Not that I thought they could replace dialysis, but could be good to maybe make my life a little easier and increase my health.

So I asked my doctors. Hey, I already have enough health problems. I certainly wasn’t asking the internet (which is both wise and an idiot simultaneously, and there’s no way to distinguish which one it happens to be at any given moment except maybe through typos and grammatical errors). First, my doctors and I talked about what are considered to be toxins – in terms of food, it is mostly chemical additives, foods contaminated with pesticides, heavy metals, and ingredients that have been scientifically modified. Basically, things I had been avoiding anyway.

However, I learned a few things that I want to share here:

A detox diet is not a real thing. Food cannot provide detoxifying effects. Only your liver or kidneys can do that. Notice I said yours there. For me, it would be only my liver, somebody else’s kidney, or dialysis can cleanse my body of toxins. A detox diet is usually very rigid and limiting – drinking a certain juice or blend for days at a time, for example. While that may help in the short term, it isn’t detoxing your body, and it certainly isn’t something you can keep doing. There is no one food that can give your body everything you need, so a diet that is extremely restrictive is bad for you in the long term.

A cleanse, on the other hand, is usually a temporary restriction of a diet in order to kick start better eating habits. While it sounds good in theory, it can be hard to sustain and impractical for some people. In other words, if you went on, say, a sugar cleanse, you would stop eating anything that had added sugar. The idea behind a cleanse is to use natural, nutrient rich foods to help your body work more efficiently. In other words: if you’re eating less crap, your body won’t have to work so hard to get rid of all the gross stuff you’re consuming. That means it’s still your body doing the work.

A pro of both is one simple concept: you remove junk from your diet. Just keep in mind that you are detoxifying or cleaning up your diet, and not using food to detox your system. Don’t believe anybody who tries to tell you otherwise. Neither of them are sustainable long-term, and most people end up gaining weight back the minute they start eating normally again. These diets don’t teach you the good stuff, the important things, like reducing calories or establishing a more balanced diet that consists mostly of healthy foods.

You probably take your kidneys for granted when they’re working properly. Don’t worry, I don’t hold it against you. I used to be like that, too.

In case you were unaware, kidneys have a pretty important job: they act as a filtration system. Blood flows through them, and your kidneys take all the junk floating around in there and filter it into your bladder so you can pee it all out. That way, your own blood’s not poisoning you and you’re not blowing up like a balloon filled with excess fluids. Kidneys also help you make red blood cells and regulate your blood pressure, which is especially helpful if you want to be alive.

So you can see how it could be a gigantic problem if your kidneys stop doing their job like mine did. Amazingly, we have developed machines that can act like kidneys and do their job when yours are slacking off so much that you’re in kidney failure.

First, the doctors surgically placed what’s called a fistula in my arm so that they could have access to my blood vessels. A fistula joins an artery and a vein inside your body and makes it easier to get to your blood. It was a pain. There are all kinds of rules about it: don’t carry anything heavy with that arm, don’t wear clothing that is snug on the fistula, and I constantly had to check it to make sure it wasn’t getting infected and working properly. However, it was necessary in order to get my blood in and out of my body as easily as possible so that I could begin dialysis.

My parents would take me to the dialysis center three times a week. A technician would put two needles into the fistula (this sounds painful, but it was more annoying and uncomfortable than anything). My gross blood would come go through one needle into a tube that lead to a dialyzer – that’s what the machine is called – so that it could do the work my kidneys were too screwed up to do. There is a membrane inside the machine that is similar to what’s in your actual kidney. It filters out little things like urea and creatinine. Blood cells, proteins, and other good stuff are stuck because they’re too big to fit. Everything trapped on that side of the membrane, now squeaky clean, would come back into my body through a tube and into the second needle in my arm.

The whole thing took about four hours. It was pretty boring to just sit there, but I’d do most of my reading assignments for school or watch movies on my laptop while it was happening. Other times, if I wasn’t feeling well, I might fall asleep. It depended on how crappy I felt and how comfortable I was. It took a while to get used to everything. In the beginning, I would get headaches. One time, I even threw up. They had to tweak a few things in order for me to feel better, but eventually I did.

Now that I have a pretty rockin’ kidney, I don’t have to do dialysis anymore. It is amazing all the things that you can accomplish when you have an extra 12 hours in your week to do whatever you want.

While your experiences might be different from mine, I wanted to make the process a little less scary and talk about it in common terms for anybody who might be afraid of what is potentially going to happen to them. Definitely talk to your doctors so you know what to expect, but sometimes they make things sound so complicated! I hope that this post can set peoples’ minds at ease a little.

I wanted to give you some advice on how to make healthy, good choices. I took my health for granted when I had it, and I regret that pretty much every day. So I’m going to leave you with some tips to maybe inspire you to make some changes before you are forced to make them like I was. They may not seem like a big deal to do, and that’s my whole point.

My first tip: actually see your doctor. I know health care in this country is nuts, but this is important. Get seen when you’re sick, and go back if you don’t feel better. Get a new doctor if the first doesn’t help you or dismisses your symptoms. Yes, a $50 visit to find out you have a cold sucks, but if I’d gone to the doctors when I first got sick, or returned faster when I didn’t start feeling better, I might still be rockin all my own internal organs. Do those annual checkups, too. It will help your doctor better diagnose you when are ill.

Eat better. Stop drinking so many sugary drinks and alcohol. Drink more water. You will look and feel better, and you’ll probably lose some weight. If your food has ingredients that you a) can’t pronounce and b) don’t occur in nature, stop putting it in your body. I’m not saying go into your fridge or pantry and throw everything out. But you can swap out some of the junk you eat and make better choices. Like the crunch of potato chips? Try baby carrots or celery. Make a few small changes, and then you’ll make some more. Before you know it, you’ll have a much better diet. Meet with a nutritionist if you aren’t sure what you should be eating.

Last idea: move around more. It’s not my place to tell you that you flat out have to exercise (although you should!), but start out slowly if you’re not used to it. Have an office job where you sit at a desk all day? Take a few 10 minute breaks and walk around. By the end of the day, you’ll have a half hour of walking under your belt. Not so bad, right? If that’s not something you can manage, do some cardio during commercial breaks at home – some lunges, squats, push ups, or even marching in place, would be an improvement over sitting there doing nothing! If you want to do even more, there’s other options: there are plenty of armchair-to-fitness programs out there (like couch to 5k programs). Go to your local gym, yoga studio, crossfit facility, swimming pool, anything you’re interested in.

If you only do one or two things, like swapping out whole wheat bread instead of regular white and parking farther away from the entrance in the parking lot, you will see changes. Those things might inspire you to make more changes in your life, or they’ll help you get even just a little healthier. And that’s pretty cool, isn’t it?